Part 1

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Dave: Hi folks, this is Dave Bernstein and we would like to welcome you to Story of Survival. Today, we are speaking with Dr. Elizabeth Kuhn. She is from Richmond, Virginia, and she’s going to be telling us about her own personal story of survival; how she not only survived cancer, but thrived in its aftermath. Without further ado, we would like to welcome you to Dr. Kuhn. Elizabeth, how are you doing today?
Elizabeth: I’m really good. How about yourself?
Dave: I’m doing fantastic. Thank you so much for joining us today, and helping our listeners understand what it takes to thrive through cancer. Go ahead and tell us a little bit about yourself, your background, maybe your original diagnosis and prognosis. Who is Dr. Elizabeth Kuhn?
Elizabeth: Well, I originally grew up in Germany and always dreams of other countries and eventually became an English major. When I discovered linguistics, I made contact with a lot of people that were living all over the world and most of my favorite linguists were in America, in California actually.
This was my big dream; to go to California to study with them. I did. I ended up going to Berkeley to study with my favorite linguists, and to get a PhD there in linguistics. This is how I became Dr. Kuhn. Then I got a job at Richmond Virginia Commonwealth University in Richmond, Virginia. That’s how things started.
After doing that for a long time, I recently left academia, partially; I’m still going back to teaching classes but I left it as a full time thing, for the time being anyway, and I’m now doing Internet marketing and writing, and similar such things.
Dave: When you found out you had cancer, obviously that was devastating news. What were some of the thoughts that were going through your mind? How did you feel?
Elizabeth: It was about three years into my stay in Richmond. I had a pretty rough time here, actually, because it wasn’t quite I had expected. I was broke. I was working myself half to death, and I didn’t really like Richmond at the time. It was so much more conservative than any place I’d ever lived and coming from Frankfurt to Berkeley, moving from there to Richmond back in 1989; I was in deep shock.
When I was diagnosed, I had been so miserable and so stressed that it almost, for a minute there, it felt like relief. It was like, “Oh goody, can I get out of this one.” Of course, this was a little bit of a morbid humor kind of thing, too. I kind of got a grip on myself and said, “Of course, I have no intention of dying” and I was
very traumatized by the idea of being disfigured because I was very much into my physical self, and particularly proud of my breasts. They were quite nice looking.
I derived a great deal of my “marketability” on the dating market out of having great breasts because other parts of my body weren’t quite so attractive. That was very traumatic for me, actually. It was between worrying about death and worrying about not ever getting laid again.
Dave: How did you research the topic? Did you look after any books or television?
Elizabeth: Oh yes, but first emotional stuff. Once I was dealing with this, once I decided I wanted to find out more about this, I camped out in front of the computer at Barnes & Noble and read stuff. I drove my doctors crazy because I was very opinionated. In fact, I switched doctors at first because he immediately wanted to cut and I said, “Wait a minute; you’re not cutting anything until I have a lot more information first.” I was a very self-directed patient, not very patient.
Dave: You mentioned that a lot of doctors want to operate first and ask questions later. Did you have any conflicting attitudes with your doctor? Was your doctor in one mindset and obviously you said, “Hold on for a little bit; I want to do some research first”? Did you have a great relationship with your doctor in that aspect?
Elizabeth: I went through several doctors. The very first one found the lump; actually, I found the lump but I took it to her and she did a mammogram, and she immediately wanted to send me to a surgeon. I was pretty freaked out. She was sort of treating me in a very – I felt it was in a patronizing way. I immediately went to one of my colleagues since I was a professor at VCU, one of my colleagues taught at MCV, the medical college. I asked her for some help. She sent me to another doctor.
I quit the first doctor, changed doctors mid-sentence practically. I found a surgeon who was first doing a needle biopsy. Overall I liked him but eventually we had some conflicts, as well. In my research I had discovered that one of the things they usually do is cut out the lymph nodes and that can cause major problems with the arm; swelling and lymphodema and so I didn’t want that. He refused to operate on me unless I agreed to do this.
That wasn’t very good and he was very misinformed about the possible ramifications. He knew nothing about lymphodema actually. That was a bit of a conflict, plus in hindsight I’ve learned that I should have discussed much more in detail as to exactly where he was going to put what kind of cuts. He pretty much butchered my breasts.
Later, he left that hospital so I went to search for a new surgeon and doctor. I found another one and I really get along excellently with that one. He is still the doctor who takes care of me.
Dave: As you were studying a lot of these treatments, did you go through any alternative treatments, any herb supplements, or just traditional treatments?
Elizabeth: I was doing all of the traditional stuff. I was doing the surgery, I was going through chemo; in fact, even what kind of chemo was something that I negotiated very hard with my doctors because they ended up trying to put me in the wrong trial that wasn’t even right for me. I finally talked to the chemo guru and I also researched it and I had to educate myself a little bit to understand the language so I could say, “I’m not doing this chemo because it could cause heart damage and I’m not sure it’s worth it, so I want to do that one.” He agreed that I would be a good choice and that’s what we ended up doing.
I also did radiation as well. Then, I did a ton of alternative stuff, actually, because first of all, my arm. He did take out all of the lymph nodes and I immediately had problems with my arm. I went to research and find somebody who would be able to do preventive care on my arm to make sure that the fluids in my arm would find a way to get back to the rest of my body so they wouldn’t start stagnating and making my arm into a major problem.
That was my primary concern at the moment because it was immediate and quite costly and I really didn’t have the money. I used credit cards to pay for it and I also did other things like alternative stuff; I worked with a chiropractor who helped me do things that would help my body better cope with the chemo. I took herbs and I ate organic food, and even some juicing at the time. I was doing a lot of those kinds of things, as well.
Dave: You mentioned the chiropractor and juicing. I was going to ask you; you’re reading my mind right there. What are the other things you started to do in your everyday life, once you had the realization that you were going to be going through cancer treatments? How did you bring your mind and body connection together?
Elizabeth: I was extremely fortunate that once I was diagnosed and the surgery was scheduled, it was the beginning of a semester. My department simply cancelled all my classes and put me on sick leave. I had a tremendous window of opportunity to just be, read, and do research, and soul searching and so on, which I hadn’t had before or since.
It was really ironic in some ways. I was more recently thinking about this; this was traumatic and painful at times, but it also was an amazing gift in some ways,
to have that extra space. I wouldn’t have had that if I hadn’t gone through that, in fact, that was one thing I should mention. It’s a book that was very, very important as I was going through this. It was Lawrence LeShan’s Cancer as a Turning Point. You probably know that. It was just amazing and it was my Bible, really.
Immediately on the first page he grabbed me because he talked about a story of a woman who had cancer. He talked about how she was in despair in her life and that was making her immune system not go to bat for her. I thought, “That’s me,” because I was so miserable.
His prescription eventually was to find ways to make yourself happy. That was my mission. In terms of mind, body, and spirit stuff, my mission was to do whatever I could do to figure out a way to lead my life in a way that would make me happier. Since I hated Richmond at the time, I decided to stop that and find things about Richmond that I enjoyed.
I did that. I really like Richmond now. I’ve found friends. I’ve found things and activities I enjoy. I’ve become part of a community. I rather liked it after a short time, actually. That was a very successful mission.
I also started writing. I had actually studied journalism in Berkeley, in addition to linguistics. I had started doing some writing, but more like journalistic-type writing. When I came to Richmond I was in the English department and it had a huge creative writing contingent. The people in there, basically going to their readings and things, I started to get a little bit of poet envy. I always saw people line up and ooh and ah over the poet of the evening. I thought, “I want some of this. I’m pretty smart too. I think I can write enough to get some of that.” Also, some of the poetry that they were reading was really speaking to me and resonated with me in a way that made me thing I would like to do that.
When I finally had some time off, I decided to do some journaling and experimenting with a little bit of poetry. It was really great because I was able to sort of vent my feelings and to also shake them in some ways. That was another big part of what I did when I went through that.
Dave: I’m so glad you mention the poetry because I was going to ask you about that. The poetry in itself is an amazing support group, something that is coming from yourself internally, but something that you can also share with other people. Let me ask you; do you have a poem by any chance that you would like to share with the listeners?
Elizabeth: I have a lot of them.
Dave: Are there any favorites that you might want to share today?
Elizabeth: Let’s see; I’ve got the book here. Let me read one of the first ones that I ever wrote. Of course, I’ve kind of cleaned it up a little since then. That’s really the experience I went through so I think it’s quite relevant. There are a couple of them. There is another one I would like to read a little later. This one sort of reflects what it was like and I wrote it literally – it was one of the first ones I really wrote that came out of taking my notes and seeing line breaks in them and trying to be playful with them a little bit.
I’m here, now. Metratraxate, Psychlophosphomate, and the antiemetic Ondansetron. Every first and second Thursday they drip into my vein as I lie in a Barcalounger, feet up, reading New Yorker cartoons and Reader’s Digest Campus Comedy.
I like the Barcalounger so much I bought one. “How are you feeling?” everybody asks, but they don’t want to know. They want me to say I’m okay, but I don’t, so they stop.
The scalpel cutting into my breast sliced it like roast chicken, taking out the offending portion with a margin of error. When the nurses talked about it, they called it CA, like California – never cancer. Did they do that for my sake, or theirs?
70%, five year survival rate means five years after the diagnosis 30% are dead. I tell myself it doesn’t matter, for today. I could be crushed by a falling airplane on my evening walk tomorrow. I might live three months, or three years, or thirty. There are two hot cups of coffee on my breakfast table.
Dave: That’s absolutely amazing! Before we are finished today, I definitely want you to let people know where they can get some of your poetry. I think you’ve done an amazing job of expressing how you feel and I think you are really grasping how other people are feeling as well, too.